Abstract
Background:
Data collectors play a vital role in producing scientific knowledge. They are also an important component in understanding the practice of bioethics. Yet, very little attention has been given to their everyday experiences or the context in which they are expected to undertake these tasks. This paper argues that while there has been extensive philosophical attention given to ’the what’ and ‘the why’ in bioethics – what action is taken place and why – these should be considered along ‘the who’ – who are the individuals tasked with bioethics and what can their insights bring to macro-level and abstract discussions of bioethics. The paper draws on the philosophical theories of Paul Ricoeur, which compliments a sociological examination of data collectors’ experiences and use of their agency coupled with a concern for contextual and institutional factors in which they worked.
Objective:
To explore the tensions in data collectors’ everyday research experiences and contexts, and examine the features which they presented as shaping their bioethical practice, by drawing on ethnographic and interview data and insights gained through graphic elucidation techniques. To also demonstrate the value of exploring data collectors views and unique insights that they bring to our understanding of bioethics in practice.
Methods:
The findings were based on an ethnography conducted in western Kenya with data collected over a 2-year period (2007-2009). The study examined data collectors involved in five different medical research projects which varied by their research design and their disease focus. The projects involved different national and international research partners (with collaborations between academic institutions, public health bodies, pharmaceutical companies and non-government organizations). Data collectors were recruited locally, were from a predominant ethnicity and familiar with the cultural and geographic context, and all met minimum requirements for research institutions in relation to age and schooling levels. The study involved multiple methods, including observations, interviews and a graphic elucidation technique.
Results:
Data collectors’ practice of bioethics was shaped by their position at the frontline of face-to-face interactions with medical research participants and community members, alongside their own personal ethical values and motivations. Institutional interpretations of bioethics also imposed certain parameters on their bioethical practice but were generally peripheral to their sense of obligation and the expectations conferred in witnessing the needs and suffering of those they encountered during their research duties.
Although the principle of autonomy has dominated discussions of bioethics and gaining informed consent is seen as a central facet of ethical research by many research institutions, instead, data collectors were concerned with remedying the dilemmas they encountered through enacting their own interpretations of justice and beneficence and imposing their own agency on the circumstances, they experienced. Their practice of bioethics demonstrates their contribution to the conduct of research and the shortcomings of an over-emphasis on autonomy.
Available from:
Social Science and Medicine, 98, (2013), pp 361-370.